She Landed

Well, the day has finally arrived. My good friend Jacqui from the UK is back in town for a visit and I'm gearing up for a great week. We have some loose plans, but I'm mostly excited that I'll be able to talk to her face-to-face instead of through text and FaceTime.

We've been friends for about a year now. She first reached out to me through Twitter to ask about the VNS, as she was considering the surgery. It turns out it's not an option for her, but we kept emailing, texting and talking via FaceTime.

We quickly realized that our lives strangely coincided when it came to epilepsy, then our friendship grew to the point where we found out that we were similar it many more ways. Our personalities really did mesh well together. We hold nothing back about our lives. There really are no secrets... It's like she's my sibling, only 4,000 miles away. Truly a strange thing considering we come from pretty different backgrounds, and cultures.

We talk about everything. Epilepsy, family, work and the lack thereof, language, culture, food, and tea vs. coffee. The list goes on and on. I'm still baffled as to how our friendship grew so quickly. Now we do not have a day where we don't shoot each other at least one message to each other each day. I look forward to it everyday, and I will admit that now my day wouldn't feel right if I didn't talk to her.

Sara, and everyone else in my life knows about her and our closeness. They too are so happy that I have her in my life. Not just because we support each other epilepsy-wise, but also that I have a best friend, even though she's so far away. 

This is the second time in under a year, months actually, that she's been able to make the trip to Chicago. I know I'll be able to visit London someday soon, but I'm so happy that she's had the time and resources to visit Sara and I. 

This week we're going to walk the city. Talk, shop, visit museums and eat. I'm sure there will be a lot of laughing and crying, both of which I'm looking forward to.

I know that you're reading this Jacqui, and I want you to know... I want everyone else reading this to know that you've changed my outlook on not only epilepsy, but life itself. I thank you for that. This week is going to be great. A great week with a great friend. xx

I See You Complaining

Like a lot of people these days we spend a good amount of time online checking status updates, tweets, eBay listings, shopping, the list goes on. 

By now you probably all know that I have quite a bit of time on my hands with being on disability, so I probably spend a little more time on Facebook and Twitter than the average person. It's a nice way to stay in touch while being surrounded by these four walls.

I see a lot of positive posts, articles, funny videos, etc, but I also see your complaints. Yes, parking in the city in a bitch, coffee is way too expensive, your trash didn't get picked up on the right day, dating has become impossible for anyone over 30, the list goes on.

What I really want to see more of is people posting things that they're thankful for. Your kid is doing good in school, you found a twenty in a coat that you haven't worn in months, my cancer is in remission, I haven't had a seizure in X amount of days or, damn you look good in those shoes! Big or small, positivity matters.

I'm posting this now because my battle with Epilepsy has been a complete disaster. Meds don't work, but the ones that do cause so many negative side effects that I find myself at a crossroad... seizures or constantly thinking of harming myself. Which would you chose? That's what I thought. 

I chose the harm myself road a few times, and at least with a seizure you're knocked out and you don't feel anything until you wake up, and that is usually a headache or bit tongue.

My point is this: If people like me have to come to crossroads like these, then surely you can come to your own crossroad and decide to spread some positivity to those around you instead of gathering all the meaningless negativity that happened to you throughout your day and sharing it for the world to see, and most likely...... ignore, unfollow, and unfriend.

Stepping off the soapbox now.

Klonopin

After a couple weeks of strong seizures while still recovering from shoulder surgery, my doctors thought it would be a good idea to put me on a low dose of Klonopin for an extended period instead of a higher dose which they were using just to break the seizure streaks I've been having as my seizures tend to group for days at a time. 

I also started an antidepressant called Lexapro on a daily basis. All of these new medications seem to be working as I'm in a good mood while I haven't had any signs of a seizure in just about a week, which is about as long as I've been taking the low dose of Klonopin. A week doesn't sound like a long time, but with epilepsy you tend to feel when you're primed to have a seizure. Bad mood, body twitches, headaches, anxiety, depression... They all are signs that a seizure is inevitable.

For the last week I've been waking up in the morning with a strong anxious feeling, but once I take my morning dose of medication it all goes away in minutes. I've been looking for this combination of medicine for months, maybe even years. There are very little side effects so far. In the morning I'm awake and happy, and at night I'm ready to sleep and for the most part, sleeping through the night.

I needed this for my arm. I've been very worried that the seizures could hinder it's healing process. After the few seizures I've been having I could tell that if I didn't have the sling on, my arm would extend and stiffen (which is normal during a seizure), and it has stopped it from moving out of place.

This comes with perfect timing as I get the sling off next week. My arm is feeling stronger everyday and I find myself moving it in ways that I haven't been able to without pain even a couple weeks ago. Right now things are looking good. A statement I haven't made in months.

Finally, Work

After two years being stuck behind four walls, I think I'm ready to finally re-enter the workforce. My arms will be both back to new and hopefully my spirits will be too.

Obviously, there are going to be disappointments. Maybe two or three jobs that I go through as a person with epilepsy, but I know that there's something out there for me.

I'm trained in graphic design, but I feel like working with others with epilepsy could be my true calling. Whether that be at the Epilepsy Foundation, a hospital, or who knows where else. As a person living with epilepsy, I feel like I can give very good advice on how to go on living a daily life with this debilitating disorder.

As far as graphic design goes, I see myself working in the non-profit sector. I just feel like helping others is the best way for me to live my life to the fullest.

Money is obviously an issue. Sara and I have been living hand-to-mouth since I developed epilepsy, and it's only getting worse. I don't know what to do. Money is money, I don't need much but I need enough to pay our bills on time and take some of the pressure away from Sara.

When I was let go from my last couple jobs (the most recent one was because of the seizures), it hurt me deeply and I still haven't quite got over that. Hopefully, even though setbacks are inevitable, I can put them aside in my mind and charge ahead.

My arm will be healed by the end other year. If anyone has and good leads for me, it would be greatly appreciated.

@WGNMorningNews

Let's face it, news is depressing, but I found an outlet for receiving depressing information in a way that by the end I'm smiling. How is this possible?

Every morning I watch the morning news on WGN in Chicago. I've been watching it for years now. At first, I would watch it while getting ready for work. I would have the TV on while eating breakfast, taking a shower, and brushing my teeth. As I was getting ready, I would run around the apartment occasionally stopping to hear about the weather and stories of the day.

Then one day I started having seizures. This is when I went from a casual viewer into a outright fan. 

Epilepsy has put my career as a designer on hold for what seems like an eternity now. I look for structure in my day at home and I find that the news is an integral part of my morning, the structure I so desperately need now that my days are spent at home.

Now I wake up with my wife and feed her the news of the day (most importantly traffic now that she works in the city) while she runs from room to room preparing for her long day at work. The difference is, between all of the bad news that is offered to me on a daily basis, WGN finds a way to break this kind of news up with segments that lean on the lighter side of life.

I need this lighter side of the news because my life with epilepsy has been a whirlwind of emotion. I find myself not only having seizures, but also the psychological side effects of the seizures and epilepsy medications. I've had seizures during their program but have had the seizure end with a laugh. How is this possible?

The most depressing place to be while watching their program has to be the hospital while undergoing an EEG of my brain. (An EEG is basically a 3-7 day test where doctors glue wires to your head and provoke seizures so they can be measured.) I usually have 1-3 seizures, sometimes more. But everyday when I wake up strapped to a padded bed with wires glued to my head, I flip on the WGN Morning News to hear about what is going on around the city, and have a couple good laughs. I usually have a nurse, doctor or visitors in the room to share the program with, which is always nice. No one wants to be in a hospital room alone.

All I basically wanted to say here is news is important to me, but I need it fed to me in a way that by the time the program ends, I'm both informed and entertained. WGN Morning News provides that. Thanks to them.

Bankart Lesion Repair

Last Thursday I went in for a Bankart Lesion Repair on my right shoulder. Basically, after falling on it so many times during seizures my shoulder became weak and would constantly dislocate. Even when doing modest chores like taking a shower or walking the garbage to the bin. I would lift my arm up and the shoulder would just pop out quite painfully. After some rest and slow turning I could pop it back into place, but in the days that followed I'd be in a tremendous amount of pain.

Many of you know that this is not my first shoulder surgery. The left shoulder was broken during a seizure and I have a titanium plate with screws holding that one together. Thursday's surgery seemed less invasive as the incisions are small, but the pain level seems to be just about the same. The recovery time is similar, too. 16 weeks of physical therapy.

My family, and especially Sara, have been so helpful. They know that I still run the risk of having a seizure which wouldn't necessarily undo what the surgeons have done, but rather strain the muscles that are trying to heal, which would mean a lot of pain and discomfort.

I've been seizure-free for over a week after a bad two-three weeks of seizures and bouts of depression and anxiety. So far, so good. I did feel my anxiety level raise this morning as I knew it was going to be my first full day alone, tending to myself with only one arm. I've since sat down and tried to relax myself with TV and looking up places for our friend Jacqui from England to visit when she's here in Chicago at the end of October. Something positive to look forward to.

Today and in the days that follow are going to be tough, but I know that each day is going to get better. I'm going to learn how to live one-handed, and I'm going to be able to raise my threshold for pain so I'm not popping pain pills every four hours or so. 

Hopefully when this is all over, I can put this behind me, not forgetting these days but rather using this experience, as I do with all experiences related to epilepsy, as a learning tool to prepare me for my life ahead. It's all going to be very slow, and I'm ok with that. I need time to get my brain healed and my mindset in the right spot for growth.

Foo Fighters

Sara was trying to find tickets to the Foo Fighters concert at Wrigley Field any way she could, (searching online, radio contests, etc.), I thought the dream of going to the show was over by Friday night.

Friday night was the appointment date for my last test before I could be cleared for surgery. It was an ultrasound on my thyroid. Earlier in the day I got a call from my doctor with results from the blood test and apparently I'm having a hard time keeping my sodium levels up in my blood. So, I was already feeling pretty shitty about those test results, and then I had to walk into the hospital to have them test my thyroid, which my doctor said felt a little swollen. 

Obviously, after the test, I felt even worse. We were walking to the car and I asked Sara to cheer me up. This is when she let go of my hand and slipped the Foo Fighters tickets into my palm. "This should cheer you up," she said. I was floored. She somehow found tickets. We were actually going to see the Foo Fighters at Wrigley Field!! I immediately forgot about the ultrasound and blood test results. I was so excited.

Saturday came and we planned loosely how we were going to get to the concert... just details. It wasn't until Saturday night, so during the day I rested in bed and she watched some of her favorite shows on TV in the living room.

At about 1pm, I had a seizure while in bed. It was a short, strong one. I called for Sara and she was with me through the whole thing. Obviously after the seizure, I rested more to recover. We agreed that we were still on for the concert because my recovery time was pretty good. Eventually, we both got ready and we headed to the city.

Once in the city, we parked, ate a quick dinner, and caught the first Red Line train to Wrigley. It was raining off and on, but it didn't deter us. We arrived early enough to see one of the opening acts. Soon we were itching to get in line for t-shirts before the concert really started and they ran out of shirts. We left our seats, and got in the line for merchandise. 

It was a very long line, but we both agreed that we needed to have shirts. It's not very often that Sara and I get opportunities like this, so we had to have something to take away with us. Plus, the shirts looked so cool!

Once we were at the end of the line, I started to feel a rush of blood to my head and got very dizzy. Then came the seizure aura; the warning my brain gives me that a seizure is starting. I grabbed my magnet from my pocket and started rubbing it over my chest to activate my VNS while simultaneously calling out for Sara and telling her that a seizure was happening. It was lights out for me after that...

The next thing I remember was being carted off through the hordes of drunken concert-goers to the first aid station. I could hear Sara's voice in the background but couldn't understand what she was saying. She might as well been speaking a different language. 

We finally got to the first aid station which looked like a hospital waiting room, with several rooms with hospital beds available. I started to come around to understanding words and directions from the nurse while she was checking my pupils. I took the Ativan I had in my pocket for emergencies and waited for it to start working. It did.... Quickly. Soon, I was understanding everything, but still very confused as to why I was there, etc.

After waiting 30-45 minutes I suppose, I told Sara that I didn't want to leave. I wanted to see the show. After another quick check by the nurse, we very slowly made it back to our seats. I held Sara's hand the whole way there. She was very gentle with me and asked several times if this is still what I want to do. It was.

We made it back to our seats and the show hadn't started yet. The Ativan was making me feel very relaxed and in a very good mood. Sara and I made small talk, then before we knew it, the Foo Fighters took the stage.

The show was amazing. I kept looking around at all the people and how amazing it all was. When there was a break in the music Sara would lean in and ask me what I wanted to do.... I wanted to stay. We were experiencing something that we will never forget.

Towards the last song I agreed to go so we wouldn't have to fight the crowds getting out and back on the train. Soon we were back at our car and on our way home.

I wanted to tell this story, not because of me having a seizure, but rather how lucky I am to have Sara in my life. She, without warning, became my eyes, ears, arms and legs. But more importantly, she became my voice. 

This is how Sara and I live our lives. Years ago, I would've cancelled plans after the first seizure I had that afternoon, let alone insist on staying for the concert after my second seizure. We did it together. I'll never be able to repay my debt to her, but I know in her eyes there's no debt to be repaid.

I love you, Sara. If I could say those words in every language to get my point across, I would. 

I can't wait for our next adventure. Let's make next time seizure-free, though, ok!? :)